Sunbathing Naked, and Other Unsolicited Advice for Scleroderma

There isn’t a day that goes by without someone giving me direction. Showing me the way, enlightening me, if you will. Self-created scleroderma experts seem to pop up all over the place with their endless pearls of wisdom, fervently stepping in to save me from my disease. “Self-appointed healers,” I like to call them.

“This absolutely works for me, so you should start…”

“Oh no…no no, that’s not the right way to go about it at all…”

“I’ve done heaps of research and you must …”

Remarkably, often their “cure” is simple. Apparently, drinking lemon water will detox my system and get rid of all things bad, including scleroderma. That, along with sitting in the sun naked every day, chanting, “I offer my body to the healing powers of the universe.”

I still haven’t been able to isolate exactly where these experts have managed to obtain their qualifications, but I have been able to clarify on a number of occasions that “heaps of research” usually means “have looked up stuff on the Internet.” Most of the time they don’t even know the source of their information. It’s just “the Internet.”

Interestingly, I don’t EVER request their advice. It is simply given to me, together with a good measure of self-importance, over-confidence and often a healthy dose of defiance directed at anything scientific, or medical.

I’ve given a fair bit of thought to this phenomenon over the last week, after one particularly irritating “healer” instructed me to stop all my medications. This person informed me that “we’re being conned by big pharma,” and suggested that I only eat vegetables, and exercise three times a day.

Here are my thoughts about why these know-it-alls dare to think they know best about my body, and my scleroderma:

TRUST:

Basically, there are trust issues going on here.

Firstly, these people have no trust in me, or my ability to know my own body, disease, limitations and experience. They think they are the experts about me! I’m not sure how they managed to learn more about myself than I already know. Perhaps they are from another planet, and can somehow access my brain through some advanced kind of telepathy, or secret probing system.

Secondly, I don’t believe these people are able to trust the medical profession at any level. For reasons best known to them, they have somehow decided that science, medicine and doctors are not here to help at all. They have also decided that studies obtained from years of research and peer review count for nothing. They have become unbalanced, split from the scientific approach and down one end of the continuum. They seem unable to remain grounded, and level enough to reach a place whereby they can consider both science, and other possible remedies, that may work together well. Generally, I have found that these ardent “healers” have never heard of scleroderma, nor can they pronounce it.

RARITY:

Most people know a lot about the more common deadly diseases. All diseases are awful. However, rare diseases produce a conundrum for the “self-appointed healer.” Unfortunately, when confronted with something unknown, these people will grasp frantically at anything they are familiar with, once again believing their “cure” fits all. As Abraham Maslow wisely said, “ If your only tool is a hammer, then everything looks like a nail.”

LACK OF EMPATHY:

This is sadly lacking among the “healers.” Quite frankly, if they were able to empathize with me, they would listen rather than give advice when it was not requested! They would understand why I’ve chosen to follow my team of specialists’ advice, why I don’t exercise a lot (because over-exercising can push me into a full-on flare-up), and that stopping my medications could result in death. They’d also understand that sitting in the sun naked every day would simply result in terrible sunburn (because of some of the medication I take) and also severely traumatize the neighbors.Dear “self-appointed healers,” don’t do it.
Just listen, be kind, and get your head out of your own rear ends. Thank you.

So there it is. I’ve said my piece on this much-discussed topic.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

I’m 49 and live in Christchurch, New Zealand.
I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years.
Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound.
Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component.
These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort.
On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

I’m 49 and live in Christchurch, New Zealand.
I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years.
Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound.
Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component.
These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort.
On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

Yup. Went through this with my son’s diabetes until the day he died. When I was diagnosed with scleroderma, people who never talked to me were hitting my inbox in droves.

Turns out that the cure for my incurable disease is simply a tumeric tea. Who knew? (<– that was sarcasm, btw) Or maybe it's CBD. Or maybe it's veganism. Or maybe it's coconut oil. OR maybe it's cinnamon, probiotics, raw food, or kale.

Or maybe it's something that I'm being exposed to that's making me sick. Gluten, allergens, chemicals, nightshades, my cats, my soap, my shampoo. Oh, why have I never thought to change these things over the years as my skin and guts went to hell? Why have I never experimented with diets, food elimination, or all natural grooming products?

Why have I just sat here and let myself turn to blistery leather without ever once doing ANYTHING about it?

Because NO researcher has ever looked into natural cures ever because they're all in the pockets of BIG PHARMA.

Disclaimer:

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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